Any Sarcomatoid RCC 1year survivors?

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Any Sarcomatoid RCC 1year survivors?

by aikaterini on Tue Oct 07, 2008 12:00 AM

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Need to talk with a SRCC survivor or even with a caregiver of a patient suffering or having suffered from sarcomatoid RCC. How long? How fast does it goes? Stats talk about 6-10 months. I have read so many bitter things. I prefer hear a number from a survivor or a caregiver

Yours

Katerina from Greece

 

RE: Any Sarcomatoid RCC 1year survivors?

by Trishpm on Wed Oct 08, 2008 12:00 AM

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You might want to join the Kidney-Onc email support list (see   http://cancerguide.org/kofaq/  ) and ask your question.  It is the best place to find others with sarcomatoid RCC.

RE: Any Sarcomatoid RCC 1year survivors?

by Geri28 on Thu Oct 09, 2008 12:00 AM

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I know that with sarcomatoid RCC the outlook is often very grim.  I was diagnosed in Aug of 2007 and given a life expectancy of 3 or 4 months at the most. I have mets to the brain and a few small tumors in my lung.  I was put on Sutent which nearly killed and made life a living hell. I then went on Gemzar to stabilize things and then Taxotere to keep thing quiet. It has been quite a battle with radiation to contol the brainstem tumor and chemo to fight cancer. I go Friday to see if I will continue the taxotere or switch to Torisel.  I  lost about 30 pounds and have had some rough times but I am still driving and enjoying life.Everyone is different but I dont think the Drs can really tell you how you will or will not respond to treatment. I did good on a drug that only has a small chance of working.Do not give up hope.  Geri

RE: Any Sarcomatoid RCC 1year survivors?

by Geri28 on Thu Oct 09, 2008 12:00 AM

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Continuing from last message.  I will be 71 in December, I dont know how old you are but please try to ignore the 6 to 10 month prognosis and although you should get your finacial matters in order so you dont worry about them. Enjoy every day as a gift . Enjoy your wonderful country. Greece sounds likes a great place. I am from New York. U,S,A. Since our kind of the disease is rare is it nice to hear from someone who truly understands.Sarcomatoid is suposed to be very agressive but I have not had any real spread since I started treatment.

RE: Any Sarcomatoid RCC 1year survivors?

by Trishpm on Fri Oct 10, 2008 12:00 AM

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See "The Median Isn't the Message" about statistics and surival ( http://cancerguide.org/median_not_msg.html  ).

RE: Any Sarcomatoid RCC 1year survivors?

by Tagml on Fri Oct 17, 2008 12:00 AM

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I think I saw your posts on the Onc site...My husband is just finishing his second year of living with RCC Stage IV sarcomatoid.  He works, takes care of two houses, fishes, hunts, and generally live his life. Cancer is always with us and there are some reminders (18 different prescriptions a day) but by and large life is pretty damn good.  Remember in order for something to be an average half the info in the calculations is above that number. So forget the stats, work with your doctor and if he talks stats find a new doctor and tell him you want to live with cancer not die from it.... Best of luck Tagml

RE: Any Sarcomatoid RCC 1year survivors?

by Heather26 on Wed Mar 04, 2009 12:00 AM

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On 10/9/2008 Geri28 wrote:

Continuing from last message.  I will be 71 in December, I dont know how old you are but please try to ignore the 6 to 10 month prognosis and although you should get your finacial matters in order so you dont worry about them. Enjoy every day as a gift . Enjoy your wonderful country. Greece sounds likes a great place. I am from New York. U,S,A. Since our kind of the disease is rare is it nice to hear from someone who truly understands.Sarcomatoid is suposed to be very agressive but I have not had any real spread since I started treatment.

My Father has Sarcomitiod RCC IV it was found last year in may 2008 he had his right kidney out.  After that they found a growth in his lung.  He had surgery to remove half of his left lung and it was the sarcomitiod RCC.  He just went for his 3 month CT scan and they have found the start of a growth on his rt lung.  They will be doing a needle biopsy of the growth in his lung in a few days and if it is the Sacomitiod RCC they will be starting him on some sort of treatment.  I am trying to figure out exactly what treatments he should be looking at taking.  Right now he is a strong healthy 55 yearold. He can fight this thing but we need to be smart about every step.  because as you know it is so fast growing.  I welcome anyones segestions on treatment. 

 

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